June 30, 2010

Someone recently told me that for all my efforts on Schuyler's behalf, the reality is that I'm the one who depends on her. My happiness, my sense of personal worth, my very identity as a person is dependent on Schuyler and her own success, not just in school but in life.

And I suspect that's absolutely true. Well, I'll go so far as to say that of course it's true. And I also suspect it's something like a universal truth. I imagine 90% of the parents who just read that said to themselves, "Well yeah, no shit."

For parents, that emotional dependency makes life... complicated. There's a fear that grows, for example, out of the risk of loss, or of failure. There are the choices not made, or at least not made easily, because risking your own happiness is one thing, but it's never really just about yourself, is it? And who can ever understand the relationship you have, not just with your child but also with your fear? It becomes like another family member. Or perhaps one more monster.

But there's a flip side to that relationship, that dependency. There's a kind of comfort that comes from the innocence of a child. Their lives aren't easy, but they are pretty simple. They focus like we do, on some level, but that focus comes in the service of a child's world and the basic elements that drive it. It's an intoxicating place to visit.

If you've been following my more recent entries, you've probably noticed a certain level of anxiety in my writing, and in my life. It's been a particularly rough week, lots of fear of loss and anxiety over the future.

But I have a world I can visit, one that's not so full of fear and loss and sadness and regret. It's the same world that Schuyler lived in all by herself for all those years, and its a world that she now shares with me, happily and without guile. Tomorrow, it'll include a trip to Chick-fil-A (which she's been asking about all week) and an early showing of The Last Airbender, which she's wanted to see ever since I first showed her that they were making a movie out of her favorite tv show. That world is going to include a weekend full of fireworks and baseball.

And tonight, as she got ready for bed, that world revolved around a few games of Hello Kitty dominoes, played by a very fluid set of rules known only to Schuyler. I don't know if she knew how much I needed that, but I'm grateful to her for it all the same.

When Schuyler was younger, even before she had much in the way of communication tools, she always seemed to sense when I was running out of whatever that stuff is that keeps you going through the deep water. When I was sad, I could always count on a tiny hand reaching out to me, and a wordless little girl from another world putting that hand on mine.

And tonight, it was Hello Kitty dominoes. Schuyler doesn't understand the large things that loom over her broken father any more than he does. But somehow I think that on some level, she understands better than any person in this world how the small things might just save her dumb lost daddy.

Sometimes, often even, I feel disposable. I think maybe I am. But Schuyler believes differently, and while I think she might be wrong, I'm going to go with her instincts on this for a little while longer.

If nothing else, I'd like to figure out her rules to Hello Kitty dominoes.

June 20, 2010

It's Father's Day, so it's appropriate (and very cool) that I can point you to an interview I gave ("Fathering a Daughter with a Hidden Voice") to an excellent new resource site, Support for Special Needs. It was a fun interview that came out of a nice long chat with Julia Roberts, and I didn't make a single Pretty Woman joke, because I am occasionally capable of being a grown up.

Father's Day can feel a little strange for the fathers of broken children. Most of us feel a little broken ourselves. The reasons for that disconnect might not always be so obvious. The numbers are pretty clear; the primary caregivers for kids with disabilities tend to be mothers, and that's just a fact. I suspect that mirrors neurotypical society, but the fact remains that many, many fathers of special needs children are on the outside looking in on the day-to-day lives of their kids, and often by their own choice. It's a shameful truth, but one that does no one any good to ignore.

I hear it often. "I think it's so great that you're such an involved father!" I see the looks in the eyes of members of Schuyler's IEP team, mostly from the new ones, when I walk into the meetings, and when I speak up, as if they'd almost expect to hear Schuyler talking before a father would. And I see the broad generalizations, even here. In a recent post, when I expressed my own self-doubts and admitted that Julie and I hadn't fully faced some aspects of Schuyler's disability head-on, one commenter just mentally adjusted that and turned it into how Julie is the strong one, no self doubts and no illusions, but me? I was just like this commenter's husband, in denial and uninvolved in the details of my kid's education and care. In her head, the narrative reads that way, and so it became my narrative, too. And she's not alone.

Mostly, though, I get the opposite treatment. Some people treat me like an aberration. I'm like some bizarre extraterrestrial father who puts his daughter's well-being ahead of his own, one who goes to all the IEP meetings and all the parent nights and the playmates. "Here is a father who gives everything to his kid, and puts her happiness ahead of his own! Isn't that wonderful and weird?

Well, I call bullshit.

It seems like almost everyone has so much anecdotal evidence of crappy fathers who don't step up on behalf of their disabled kids. But in the past two years, since my book came out and I began traveling around and meeting other families, it has been my honor and privilege to meet some amazing fathers. And I'm not just talking about the ones who show up to the IEP meetings and doctor's appointments, either. I'm talking about extraordinary dads whose work on behalf of their own kids have changed the world for countless others, too.

Richard Ellenson saw a need for his son, whose cerebral palsy left him unable to communicate and for whom existing speech devices were inadequate for his particular needs. The device he created, the Tango, has been praised for its innovative design and success in social integration of AAC. Dan Habib turned his fight for full integration for his son into a celebrated documentary and an ongoing project at the University of New Hampshire, dedicated to creating and developing more inclusive schools. I've met extraordinary authors and advocates like Rupert Isaacson and Michael Greenberg. I've been in the company of some amazing fathers.

Amazing fathers, and yet they're exactly like all the fathers out there who work tirelessly for their children with disabilities. What sets these fathers apart, in my mind, is that rather than trying to find a way to fit into our society's narrow idea of what fathers are supposed to do, they've taken their talents and their abilities and they've forged into territory that hasn't always been welcoming to them.

Plenty of fathers don't do that. Is that because some of them are crappy fathers? Of course. But how many fathers respond to the low expectations of our society and our system, one that assumes that the mothers of these kids will be the ones who will take care of them? How many fathers go online to find information and end up on page after page of resources for Special Needs Moms? How many read the poems about how special those moms are, how hard they work and how they are the only ones these kids can count on? I know I see those sites and those posts. I see them every day, and even now, after everything I've said and done and written, after as many speeches as I've delivered and as many books as I've signed and as many IEP meetings I've attended and been a pain in the ass in, even now, I still hear the tiny voice in my head, the one that whispers "Your presence is not required. Your input is not necessary."

Look, fathers need to get involved. Fathers need to step up and take on their share of the work. That much is clear. That's not just in the disability community, either, but I believe it's even more critical that it happen in these families. This isn't an episode of Mad Men; the old models of fatherhood no longer work. I'm not sure they ever really did.

But there needs to be an accompanying significant shift in our societal attitudes. There has to be a change in how fathers are seen. Fathers of broken children aren't volunteers. We don't want partial credit just for showing up. And we don't want a pat on the head. We want to be involved. And we should be. You as mothers and as society should have the expectation that we're going to be, and with that, you need to be willing to step back and let our talents shine, let our unique perspectives contribute fully.

June 9, 2010

(The perhaps inevitable result of scented markers and fine motor control issues...)

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First of all, I've posted my monthly essay on Hopeful Parents. Not a long or particularly profound one this time, but it's what was in my head and so there it is. Sometimes the thing I need to say is as simple as "Hey. Cut it out."

Schuyler has begun her summer with us, and we're walking a fine line between "Whee! Isn't summer FUN?" and "Holy crap, we've got a lot to do. Here's your homework for the rest of the day. Do it now, and maybe you can catch the last dying rays of the sun before it's time for bed."

The trick, I think (hope), is to keep it interesting, and so far I think we're doing okay. Schuyler's new fascination with email means that when I send her a random funny photo and ask her to reply with a story about it, she's into the task. In the same vein, math puzzles, ebooks, word games, all hold her attention when they are presented on her iPad, which is turning out to be an even better tool for her than we'd anticipated.

She comes with me to my office on days that I work, and she draws or writes or reads, or otherwise amuses herself on her iPad. (Thank you, streaming Netflix.) We talk a lot and we wander the campus when one or both of us needs some air. My new office is down on the bottom floor, in the back of a student computer lab that is closed during the summer, so it's quiet while she's here. I'm happy to have the company.

So this is our summer. Mostly I find myself focusing on being fun and engaging with her, and trying hard not to let on that in ways both large and small, and both fleeting and forever, I feel like my world is slowly falling apart around me.

June 3, 2010

Schuyler has been writing poetry in school, accompanied by her own drawings. I'm not under any illusions here; aside from perhaps the one about the fox (which is also my favorite), these poems are clearly the product of a LOT of guidance and help from her teachers.

What keeps it from being "macaroni art", in my opinion, is the fact that the concepts and imagery should be very familiar to anyone who knows Schuyler. It's all hers.

(Just this once, I'm going to keep comments closed on this post. I wanted to share something special instead of just my insecurities, as a break from my self-indulgent writing of late. Either you'll enjoy it or you won't, but I don't need to know either way. I know how I feel about Schuyler's work. And that's enough for me.)

COUPLET

I heard of a foxI opened a box.I heard of a foxHe's wearing my socks.I heard of a foxHe jump and he knock.I heard of a foxHe has the pocks.

HAIKU

PuppiesPuppies can look sad.Puppies are like little dogs.I like to hold them.

PastaRavioli rocks.Ravioli is awesome.Cheese filled pasta squares.

"Queen of this whole world."

QUATRAINS

I went on the field trip.I ate a cookie and a chip.I wanted to give a big cheer.When I saw a pretty deer.

I ate a cookie that was chocoate chip.I found it on a pink spaceship.Through the air the ship went zip.I am going on a trip.

The truth is that yeah, this is hard. And while I won't attempt to speak for Julie here, I personally feel like we're all failing Schuyler right now. Everyone who is supposed to be helping her is falling short. By issuing and endorsing this report and suggesting in the meeting that full integration for Schuyler is a very unlikely scenario, I feel like Schuyler's team at school is letting her down. I think I've made that clear.

But more importantly, in not understanding until this meeting exactly how much of a Potemkin village her mainstreaming experience has become and how far behind she has been allowed to fall, I have failed Schuyler. And not just a little, either, but in huge, glaring, unforgivable ways. I was supposed to know better, I was supposed to be watching for this, and I was supposed to be reaching her. I didn't.

And yet I still believe in her, even though I understand that perhaps I am setting myself, and probably her, up for sadness and disappointment. I'm still not accepting a future for her where she's unable to catch up to her classmates, even though I will love her with the same burning intensity and the same sense of pride if she doesn't. I might be wrong to fight like this, but she's so smart and so inquisitive and so insanely positive about the future that I'd feel like a completely different kind of failure if I suddenly started preaching acceptance and welcoming everyone to Holland.

On a good day, I vow to fight and say that her team is wrong about her. On a bad day, I understand that they're probably not wrong. And then I vow to fight anyway.

If you'd like to know how I feel right now, remember the Alamo, so to speak. Even if you're not a Texan, you probably know at least the bare essentials of the story of the Alamo. And so you understand that when the defenders of the Alamo entered the fort as the Mexican army arrived in San Antonio de Béxar, they weren't thinking "Oh crap, we're going to die in here, and the best we can hope for is to have a bunch of middle schools named after us all one day." They believed that help was coming, that all they had to do was hold on until the rest of the Texian army arrived.

But it is a point of pride here in the Republic that after the siege began and word came from outside that no reinforcements were coming, most of the soldiers stayed to fight, knowing that defeat was all but certain.

I feel a little like I'm standing in my own little fort, reading a report that says our reinforcements aren't coming. And I know I'm going to stay and fight, to the last bullet. But yeah, I now understand how this probably ends.